In the end, she didn’t lose herself to disease, she found a tougher self who asks for care, fights for answers, and stays for the people who made her life worth the fight. She used to be the mom who never went to the doctor, the one with pantry remedies and a stubborn belief she could push through anything. Home was her world: two boys, a baby girl, and a husband working long hours. Loving them felt like purpose and repair after a hard childhood. She poured everything into being the steady parent she once needed, and nothing into herself.
Then, after her daughter turned eighteen months, the bottom dropped out. Anxiety roared. Sunlight raised burning rashes. Old sensitivities she’d shrugged off for years suddenly made sense. A first visit to a primary doctor ended with a TMJ diagnosis and a shrug, wear a mouth guard, there’s no cure. She kept going until she couldn’t. When she finally broke down in her doctor’s office, tears she never showed anyone came fast. “I can’t be who my kids need,” she said. The doctor listened, suggested antidepressants to calm the storm so they could see the real problem, and mentioned lupus. Bloodwork first came back “fine,” then the call no one wants: a positive ANA and a fast referral.
What followed was a maze. One rheumatologist dismissed her because inflammation markers weren’t “high enough.” Another talked to his assistant more than to her, doubted fibromyalgia, and listed rules for living with hypermobility and IBS as if they were a scolding. She left feeling foolish, convinced it was her fault, and stayed away from doctors for a year. That year nearly broke her. She withered to under a hundred pounds. Light stabbed her eyes; her hair fell out; mouth sores, bleeding gums, and relentless pain made clothes and sound unbearable. Food felt impossible. She couldn’t sleep, couldn’t think, couldn’t be the mother she knew herself to be. She started rehearsing goodbyes in her head, until she looked at her baby girl and stopped. Her daughter deserved memories with her, not only stories. That thought lit a fight.
Her primary found “one more” specialist, unconventional but willing to try. He diagnosed cutaneous lupus and started treatment. Weekly methotrexate calmed the flare; when her body rejected the drug, the crisis had passed. She wasn’t cured, but she could function. Pain still lingered in ways lupus meds couldn’t explain. Her doctor wondered aloud about Ehlers-Danlos and POTS. A heart monitor confirmed POTS. A year later, a geneticist finally spelled it out: she’s a rare case with both a connective tissue disorder and an autoimmune disease. Ehlers-Danlos syndrome, hypermobile type, overlaid with lupus and accompanied by mast cell activation, fibromyalgia, TMJ, IBS, and bouts of iron deficiency that needed infusions. Looking back, the clues were always there, childhood hives, sun reactions, jaw pain, but pregnancy had woken the sleeping giants. Each birth nudged them louder.
She used to think strength meant handling everything alone. Chronic illness taught her that survival is also knowing when to accept help, take the medicine, and keep knocking on closed doors until one opens. Today her kids are 7, 13, and 17. They’ve all learned the family rhythm, good days, bad days, adjustments, and they keep choosing each other. She still lives with illness. She also lives with laughter, homework at the table, and hugs that anchor her to now.
Even now, she admits the journey hasn’t been easy. There are days when pain still lingers like a shadow she can’t quite escape, and fatigue knocks her down without warning. Yet, she’s learned to listen to her body rather than fight it. She celebrates small victories, getting out of bed, cooking dinner, or simply laughing with her kids without worrying about tomorrow. Those moments remind her that life isn’t about being pain-free, it’s about being present. She knows she may never return to who she was before the illness, but in her eyes, that’s not loss, it’s transformation.
